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5.  Current System Failures

Community programs for people with developmental disabilities are in a crisis.  Today’s crisis is the result of the transfer of institutional patterns of service development and delivery to community programs.   It is time to give up the paradigm of programs and adopt a paradigm of support.  

The current system in Ontario discriminates unfairly in favor of institutional models of service.  Institutional practices in the community have created unacceptable and harmful control over the lives of people with developmental disabilities and their families.  

Today, people with developmental disabilities are seen as people with problems that must be fixed.   The system has created an array of special places where people are treated, cared for and trained for eventual life in the community.   But, “eventual” means never.   People with disabilities need support that respects them as individuals and citizens.  The support should focus on assisting people to get on with life, to be in life, not separate from it in some isolated environment or program.  

The answer to this crisis is to abandon the culture of institutions.  We need to move away from practices that make people live in the community, but fail at making them part of the community.   Services have ignored the riches of opportunity and support that community offers while depriving people of the satisfaction that comes from exercising choice.  

The current service system discriminates unfairly against families.  Thousands of people with developmental disabilities are living at home with their parents.   Despite families’ role as the largest single provider of support to people with disabilities, families are routinely ignored, not respected for their role, and under funded by services and the bureaucracy.   Even though the families’ capacity to provide care is subject to other family stressors and the aging of the caregivers, flexible support and respite is virtually non-existent in many parts of this province.

Families do not want more of the same.   Families do not want to tinker with a broken system.  They want a real transformation.   Families do want a better future that offers choices and opportunities, choices that encompass where to live, where to work and with whom to spend time.   There needs to be a change in the way we think about meeting the needs of people with disabilities.  

Families provide more support to people with disabilities than all of the formal components of the service system.   Meeting the support needs of people living at home requires that we recognize and meet the support needs of their families.  

We need to explicitly acknowledge the family’s role as advocate, support coordinator and support provider.   The person and their family must be driving the development of plans for the future.   When the person moves out of the family home the family role must be encouraged to continue.

These issues need to be addressed with new policy and direction

• The current system is inflexible, based on programs not on individual needs.  People who do not fit programs, or who do not like existing programs are not served.


• Funding is not portable, not tied to the person.  The system is not responsive and not accountable to families or the people it is mandated to support.


• The institutional approach is the first resort and usually the only resort.  People are forced to accept group homes and segregated programs in order to receive any form of support.  More effective progressive alternatives are not funded.


• The current system threatens the viability of family-directed supports by discriminating unfairly against workers hired directly by families.  Government funds higher wages and benefits for agency staff, and funds salary increases only for agency staff.  


• The Ministry of Community and Social Services (MCSS) does not value supporting the family unit, nor does it value families’ contributions and expertise, nor does it value families supporting their family members as decision makers


• Access Centers are a failure.  People are treated like commodities where the service providers “bid” for them.  The practice of forcing people into institutional programs violates their human rights.  The system of access centres is costly as well as harmful to the people it is mandated to serve.  


• Ontario government has no data on how many people have disabilities in Ontario, on the kinds of supports they require.  Funding is based on politics rather than on demographics.


• Ceilings on Special Services at Home funding discriminate unfairly against families, especially against those with the highest needs.  Ceilings are not imposed on less effective institutional models.  System serves agencies better than people.


• People are forced to live in group homes to qualify for supports.  Group homes are not a valued way to live (no other segment of society lives in group homes).  People who live in group homes are powerless and captive “clients”.


• System is not accountable to person and/or family.  There is no formal complaint process, and no appeal process for people who are dissatisfied with services.  The government does not support independent surveys to assess people’s level of satisfaction with the existing system.  


• People with disabilities are being marginalized by segregated services.  They are treated as second-class citizens.  They are denied choice and portability.


• MCSS policy of favoring institutional models of service is a major barrier to full citizenship for people with disabilities


• The current system funds programs instead of people.  The patchwork of programs in Ontario is chaotic, ineffective and unfair.  A uniform approach to supporting individual plans is needed in Ontario.  All support funding should come from one pot.


• The government has failed to respond to the strong demand for individualized funding.


• There is widespread dissatisfaction with quality of services that many agencies provide, but the system continues to fund those agencies, and fails to fund better alternatives.  The people directly affected have no recourse.


• There are no service standards in Ontario.  The government funds services but has no expectations of outcomes for inclusion, community involvement, social relationships, valued activities, personal development or accountability to the individual.


• ODSP income levels are far below poverty line.  Still based on old welfare system mentality that refuses to invest in people.


• The government continues to allocate new funding to group homes every year even though people don’t want them, with no funding for valued forms of accommodation.


• What’s Not Working: Ombudsman’s Office, case resolution, waiting lists, escalating costs of building group homes and day programs, private for-profit residential facilities, institutions large and small, a mental health system where people with developmental disabilities are trapped in psychiatric hospitals or homes for special care under the label of “dual diagnosis”, group homes and day programs where people have isolated/segregated lives “in community”, sheltered workshops, etc.


• Issues around Ministry of Education not doing their part, pressuring families to segregate their children etc.  “warehousing” students.  There is a need to give the Education act teeth when it comes to inclusion as being the first resort, and promoting full citizenship.  Government policies are needed to promote inclusion, and those policies should be consistent across all Ministries, including Education, Citizenship, and Social Services.

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